[luna.moon]

I've been out most of the day, and stuck on the bus and outside (where it was raining some of the time), where the normal movements of the bus were painful.
I had some appointments today, one with a therapist, who is starting to help me come to terms with this. I'm a new diagnos-ie, so I reckon it's probably going to take a while.
I did get my meds adjusted - actually just having my Neurontin increased. It was a little amusing that I was already on it, just on not a near high enough dosage. It was good to know that my doctor was familiar with the problem, and offered what help she could.

It's frustrating to me (as well as to a lot of you, I'm sure) about how the pain varies and there is no way to guess as to what it might be. I guess the worst for me today was when it felt like my left arm felt like it was being melted off the bone. I didn't much like the mental image when it came to me, but that's what it felt like. Not quite as bad right now, we'll see what happens between now and bed.

Questions:
1) Has anyone else found Neurontin to be helpful?
2) Is there any advice on coming to terms with this disorder (asking from fellows, not professionals)?

[Angelina55]

The thing that I try to focus on (when I can) is to find things that I can now do that I enjoy, that make me happy and not focus on what I can no longer do. Keep trying new things. Every day tell yourself something positive about yourself. And most important is to find your most comfy things. The things that are your "don't leave house without" things. I always need to remind myself that this is like a rollercoaster ride... you will have good days and bad days. Just because you have some bad days it doesn't mean that those good days are not on their way. I wish you luck on your journey.
Angelina

Originally Posted by luna.moon

I've been out most of the day, and stuck on the bus and outside (where it was raining some of the time), where the normal movements of the bus were painful.
I had some appointments today, one with a therapist, who is starting to help me come to terms with this. I'm a new diagnos-ie, so I reckon it's probably going to take a while.
I did get my meds adjusted - actually just having my Neurontin increased. It was a little amusing that I was already on it, just on not a near high enough dosage. It was good to know that my doctor was familiar with the problem, and offered what help she could.

It's frustrating to me (as well as to a lot of you, I'm sure) about how the pain varies and there is no way to guess as to what it might be. I guess the worst for me today was when it felt like my left arm felt like it was being melted off the bone. I didn't much like the mental image when it came to me, but that's what it felt like. Not quite as bad right now, we'll see what happens between now and bed.

Questions:
1) Has anyone else found Neurontin to be helpful?
2) Is there any advice on coming to terms with this disorder (asking from fellows, not professionals)?

[RSD ME]

Hi and welcome.
sorry to hear about your rsd.
I have had it for over two years have been on nuerontin from the very beginning of it.
I find that it helps alot with the pain and burning but affects my memory and speech alot.
I now take 1800 - 1900mg daily along with prednisone. I need the combination to help ease the pain of the rsd, along with advil (though I'm taking a break from the advil for a short while because of bad stomach pains that it might be giving me.)
I'm still trying to come to terms with this disorder, but it's not easy. somedays when i have bad flare ups, i get extremely depressed and scared. I see a phsychiatrist to help me deal with the anxiety. I take xanax and zoloft from him and it helps me to deal with this rsd more calmly. The best advice I can give is to try to not think about what may happen, but to just think about one day at a time. I have had spread starting this past year from my right wrist, hand, up my arm. then to my left wrist arm and hand and my right leg and ankle and foot ( and left calf is starting to swell and hurt too ) I don't think I have full body,and they saymost people don'tget that, but they don't know for sure.That scare me alot, but I try to focus on the right here and now and not the what may be. And I try to make the most of my days,except when I have meltdowns like today. Then i pretty much cry and stay in bed most of the day. Having found the support of all the people on this rsd forum has helped me so much too. They are so supportive and kind and know what I am going through and I don't think I could go through this without them. Well, I hope I helped and try to hang in there and exercise as much as you can (as instructed by your dr. of course).Take care.

[Brambledog]

Hi luna.moon great name!

Sorry you have this thing we all struggle with...there's great support here, and you can feel free to vent and tell it like it is. We do get it.

I was on Neurontin for a while after trying other meds, and I didn't get on with it at all, but I know others swear by it, so you have to do what's right for you. I was titrated up to 3,600mg a day, and it messed with my stomach and didn't help my pain, and after two bad bouts of vomiting and pain my doc thought OT best that I stopped Other folks are fine, so perhaps my stomach is just super-sensitive to it - I am a coeliac so maybe that doesn't help? Who knows. I hope the higher does controls things better for you!

I don't think you can ever really come to terms with this because it varies so much, and it does just affect every singe darn thing we try to do normally! As Angelina said, try to find the things you enjoy that don't make your pain worse. Try to replace the things you can't do anymore with alternatives that a kinder on your CRPS. You can't ever forget it, but you can distract yourself a lot of the time, and manage your own reactions to the problems it brings. It's not easy by any means, but as time goes by your pain can often change and reduce, and your body does get more used to it so that you will find you can do more. Movement is really important, so keep exercising however you can, and don't sit around for too long at any time...

Things often improve, so never ever give up, even on the worst days!

Two things that have really helped me are -
1) Epsom salts they are great with the burning pain, either in a warm bath or wrap in a damp cloth and out on the skin. You can also get a lotion/paste version you can use. Any which way,it helps the pain, and the magnesium is vital to your body too - most of us don't have as much as we should, so it helps reset the balance.
2) A Flare Box. I have a special wooden box that I only get out on really REALLY bad times. It has loads of things in it that help me to feel a little better and brighter when the pain does that melting off the bones thing (I so get that!). Some of the things are: a photo of me with my family, smiling, and on the back I wrote 'the bad things pass, the good always comes back' - cheesy but I like it. A bar of dark chocolate. A funny DVD of Greg Davies. A nice natural essential oil massage lotion that I use to massage my leg when I get bad cramps. A bag of brazil nuts (mmm with dark choc!). I scented candle - I light it and look into the flame while I concentrate on my breathing and calming exercises. An index card with the names of some calming music from my iPod. One of my favourite books that I absolutely love and can lose myself in.

Anyhow, I hope even a bit of that drivel has helped! Hope you have a decent night and feel a bit brighter tomorrow...

Bram